What I want you to see

We're in California now, having completed our check in with our UCLA research study doc yesterday.  The sun is shining and we have a tiny pleasant apartment where the back gate opens to what Griffin described as a scene akin to the one in the Wizard of Oz  where everything blossoms into a world of color. Just beyond lies the romping doggy beach we love.

                                    

I could, and I swear I will, let it all go and be here in the moment.  But for now I'm stuck on the experience of being with Ces in the world.  We had to traverse JFK airport and accomodate a very tight fit on the airplane with Walden at our feet for six hours.  No one even knew Walden was there until he briefly occupied my seat when I crawled over the kind woman next to us to use the bathroom.  It was the moment I returned to my seat, and the many like it in the airport that are stuck in my head.  It's the assessment Ces attracts from others.  Sure, Walden is a dead giveaway. Service dog? What's wrong with that kid?  But even without Walden, Cesare gets the same stares or more politely, glances. They see Cesare with his mouth often open, and one slightly droopy eye but miss his beautiful face.  He slumps forward, the weight of four anti epileptic drugs heavy on his shoulders.  What else do others see when they look at him? What is it that makes them stare? What do they conclude? There is judgment in their eyes. Cesare doesn't see others size him up.  I can't not see it.  When I watch others watch him, I hear a door slam shut.  They've dismissed him.  I can't make others see Ces the way I see him.  And I shouldn't care.  But I do.  And so I watch the watchers and hope their eyes meet mine.  When they do I shoot them fire and I don't let go until they have to turn away from the heat.  

                                       

Finding the funny

We've dissolved, over the years, into eating dinner in front of the TV.  Please don't tell the social scientists.  Everything I've read assures us that such a grave moral lapse in parenting will result in delinquent children. And don't think I don't remind my boys, every night (during the commercials) that they are destined for jail, or worse a career in politics.  Nevertheless, the kids choose (and we do too) to brave the consequences and settle down in front of the tube with the dogs curled at our feet. I have my standards, however.  We can only watch comedy.  Our criminally overpriced cable company replays The Daily Show and The Colbert Report every night at dinner time.  As my husband and I plate the food I call in to the kids to "find the funny".  They kindly go through the on-demand rigmarole and freeze Stewart in mid greeting until we're all gathered. Sometimes we change it up and watch Jimmy Fallon.

We need the funny.  I need the funny.  We need to laugh together.  My funny diet also includes "Wait, Wait, Don't Tell Me!" which can be captured in podcasts to play later. When the whole family needs a hit we play and replay Brian Regan- any of his one hour stand up videos will do.

(If you are reading this on an iPHONE or an iPAD, CLICK THIS and THIS to see Brian Regan)

Regan, for me, is generally a two handkerchief comedian.  When we head to San Diego after our UCLA doc appointments, as we will next week, we take in as many consecutive nights as possible of the National Comedy Theater downtown.  It is sterling.  It is exclusively clean comedy (as is Regan, by the way).  So clean, in fact, that they have a paper bag rule: if a performer or audience member says anything off color they must wear a paper bag on their head. Both Cesare and Griffin have alternately been brave enough to climb on stage when invited to participate in a silly skit.  No bag, by the way.  They aren't delinquent yet.

(iPad and iPhone readers, click this to see the National Comedy Theater in action)

What do you do to find the funny?

The confluence of two really good tries.

On Monday we fly to LA to see Dr. DeGiorgio for our twice yearly check in.  Dr. Italian introduced the Trigeminal Stimulator a few years ago.  I heard about it on NPR when we were already in California for the aforementioned stab-in-the-dark treatment with the Osteopath.  Cesare has been in the UCLA study now for almost two years.  In the first six months we saw a decrease in seizures of about 30%.  That was success!  After the first year, I couldn't tell anymore if it was helping.  Ces has been so unstable...who knows.  But, his enrollment in the study and the need to fly him out to California twice a year gives us  a sort of moral, ethical excuse to vacation in California.  We routinely spend one hour at UCLA and then a week in San Diego.  We must... you understand.  There must be some perks to being an epilepsy family.

What makes these trips tremendously more fun for us is taking Walden, Cesare's service dog.  He's the sweet, sweet heart given to us by Canine Assistants in Atlanta.  Ces waited three and a half years for this guy.  Trained as a seizure response dog, Walden never gets a chance to show us his stuff because he doesn't recognize Ces' seizures.  Walden audibly snores through them.  He is my son's gentle best friend nevertheless.  And the only thing more joyful than being woken in the mornng by a happy Golden's tail slapping  against the comforter is being woken by two happy Golden's slapping their tails against the bed.  Ella joined the band 18 months ago. 

Walden and Ces

Please don't ask me how (if I told you I'd have to kill you) but we fly both dogs out with us to California when we go.  San Diego loves their dogs and have whole beaches dedicated to them.  Happy for us.  

Dr. DeGiorgio may not let Ces stay in the trial once he gets a load of the seizure numbers over these last six months...they are all over the place.  And Walden may never run for the phone after one of Cesare's seizures but the confluence of the two move me to offer a rare nod to epilepsy for this one purely joyful event twice a year.  

No Fear

Cesare has an art project assigned to him in school.  He is to begin by drawing a picture of something he is afraid of.  "But I'm not afraid of anything."  We've had this conversation many times before.

Ces was diagnosed with Temporal Lobe Epilepsy (TLE) when he was six.  But that's not when the epilepsy began.  It began when he was 4, two weeks after the horror of 9/11.  We don't live within toxic cloud reach of NYC but close enough that the trauma of that day crept right up the Hudson River to our community.  One day, standing in the middle of his Kindergarten classroom, Cesare screamed- hid as if being chased.   He didn't stop screaming for 18 months.   Protective as we thought we had been, we assumed that some of the images, the descriptions of the attack had seeped into his world.  Perhaps he was traumatized, suffering from anxiety.  Who among us wasn't back then, in our own ways?  

Cesare would wake up screaming in the middle of the night.  So pervasive was his private terror that we all ended up in one room together.  1:00 am, 3:00 am, he'd startle awake shaking and screaming.  Not a night terror, he could communicate just fine.  But the things he said were frightening to me.  He was hallucinating gorillas, monsters.   I thought I was losing my son to mental illness.  

I had never heard of Temporal Lobe Epilepsy nor, unfortunately, had the psychologist I engaged to help him.  A good friend and a renowned psychologist, Dave was spending most of his days volunteering in neighborhoods near ground zero treating kids who had been transformed by what they saw. When he first met Ces, Dave believed that he was affected too.  Worsening throughout therapy, Cesare was about to begin a course of anti anxiety meds when one night (as we four slept side by side in the boys' room) I witnessed Cesare's body tense up in his sleep.  Within days we had the correct diagnosis.  Dave, really an excellent psychologist, apologized to Cesare years later and pledged never again to treat a child with chronic fear without ordering an EEG.

After a dozen years of seizing each of Cesare's events still begin with fear- that's his aura.  Ces knows it as "artificial" fear.  Epilepsy-manufactured-and-patented-fear.  He knows no other fear. I've never seen him fearful: never startled or recoil from an image or a movie scene... nothing at all. And he doesn't fear epilepsy.  Crazy as that is.  He's accepted it. 

His teacher prods, "Something Ces, draw something you fear".  He can't.  It's the epilepsy, stupid.   

Footnote

It may matter to no one, and likely you did not notice, but I feel I should make some statement about the way my children's names keep changing as I write here.  They haven't in fact.  But I couldn't find my way between privacy and transparency.  Both of my boys have weighed it out and decided that they'd very much like to keep their names, thank you.  They seem to trust that I will write what I need to write.  So, thank you Griffin and Cesare for your love, trust and maturity.

Or as I like to think of you...

Buddhas come in all shapes and sizes. This one can fly.

                                                                 Slomo (click)


                      I've never met a neurologist quite like Slomo.  But he's my new hero.

You want to feel happy?

Sixteen seizures last night.  I'm ready...

                 CLICK